Thursday, October 16, 2014

The Two Hexie Day

Thursday night update on my Mr.O'Wonderful. . Day two on 6th Tower, CMC main.
 In his words, he is now completely disabled. 
The heart a-fib has corrected itself with the help of medication, so the blood clots in the lungs are probably stable. He is on Warfarin for life so that clots hopefully will not be a problem again The main problem now is saliva build up in his mouth, thank you ALS. The patch, the suction machine...are not helping and he wakes in the night with the fear that he will choke to death on his own saliva. Our poor exhausted daughter spends every night in the hospital with him. When he calls for the nurse and the nurse says..."May I help you?"...he cannot answer as his voice is so impaired by ALS. Himself was never the same after the feeding tube operation 2 weeks ago and my fear is that he will never be the same after this onslaught of large blood clots. 

ALS I hate you.

They are not considering discharge until next week and my fear is that he will not be considered a candidate for coming home. Then he is worried about being in the doughnut hole for medications...ugh... He has asked for a Hospice consult tomorrow...stay tuned!!. A HUGE thanks to my daughter and my sister for their wonderful teamwork here. The grandchildren are doing great...Karate belt graduation was tonight!
My skills are not in nursing, they are in advocating.  Today I was quite busy, let me tell you.  When my mama bear gets out.  He has the best room, the best nurses...the best friends, etc. Thus it was only a two hexie day!!
Thank you so much for all your comments the past two days.   My blogging friendships meant the world to me.


IHaveANotion ~ Kelly Jackson said...

I HATE ALS too....on your behalf as I have no clue as to the reality of that particular disease.

I think about your family and I pray....and I hope for amazing moments....because I believe in amazing moments that affect us for years to come.


Michele Bilyeu said...

Thinking of you every single day now. My brother's mentor and advocate for getting him into med school ended up with ALS. By then, my brother had graduated and started his own practice. Having this dear friend dealing with this disease was more than he could handle and he wasn't the kind of end of life friend to him that he could have and should have been. It haunted him for decades but in the end it changed him and he did become both a great and caring Dr. to his patients because of what he had learned by bit being who he wished he could have to his Dr.friend with this horrible disease. I suspect it changes lives forever no matter what and I can only say that I see you as an amazingly strong woman doing the very best she can with so many different challenges at once. God Bless that daughter of yours and may she truly realize just how much this means to her dad even if he no voice to tell her. Sending you hug after hug across time and space.

Rachaeldaisy said...

I'm not quite sure what to say to you, but you are all in my thoughts.

ES said...

I hate ALS for you too. Bless your daughter and sister.

ES said...

Also bless the kids and the karate belt!!

Alcea Rosea 31 said...

ALS in all it's types is horrendous. Great you have got support, accept it all. Big hugs.
All of you in my thoughts and prayers.

Holee said...

Oh my Diane, I have been moving since last Friday and have not had internet. It's heart wrenching reading the up dates. I am sure Mr. is worried about a nursing've done your best to keep him home, a lot better then some would have done with the children also living with you. Whatever the next few days bring is really out of your hands...and that might be best because you are not a nurse and that's what he needs now.

I checked for your post as soon as I came on line because I know how fast ALS can change an entire household. Thank goodness for you daughter and sister. You will get through this as lonely as it seems right now just think of life as it was..the years you've spent together, the good times and the laughs. He's too sick right now to tell you he loves you, but he does and nothing can take away those years..not even ALS! You're in my thoughts everyday.